Dr. Rode

A recent study from Columbia University Medical Center concludes that less than half of early-stage breast cancer patients complete their full prescribed course of hormone therapy. Paola Rode, MD, a medical oncologist at Lahey, addresses why that is, and why it is important for patients to comply.

“Women stop taking their medication because of factors like the side effects they cause. Some women may experience hot flashes or mood changes,” Rode said. “That is something they should discuss with their medical oncologist because there may be alternative drugs a patient can take to relieve the discomfort.”

She said it might be necessary to take a break from the medication for awhile and then resume it, all directed by a physician.

Another factor for lack of adherence is the cost of the drug or the co-payment. Hormonal therapies are expensive, for the most part, and without the right insurance (or no insurance) a patient might have to weigh purchasing their medication against other expenses. To compound this further, some are on multiple medications for other conditions, like blood pressure control or heart disease, and they face choosing which ones to take this month and which to take next month.

Thankfully, generic hormone drugs are hitting the market and will alleviate the cost factor for cancer patients. Rode says if you are having difficulty paying for a drug to speak with your doctor. “Some pharmaceutical companies do provide financial relief for the drugs.  I’ve put patients in touch with our social workers who know where to call for assistance and the patients have received it.”

Rode believes younger breast cancer patients might be more compliant because the stakes are greater for them, especially if they have young children. They can be more likely to tolerate side effects and/or do everything in their ability to make their treatment successful.

“It is so important to be compliant,” said Rode. “We know hormonal therapy can be as effective as chemotherapy is, and we know that it improves survival and decreases recurrence. By being compliant, you do improve your overall prognosis.” When patients are not compliant it is difficult to gage the effectiveness of what was prescribed, she said, especially if there is a relapse.  

Rode sees her patients on a regular basis throughout their therapy to be sure all is going well.  “It’s our (medical) obligation to help them with the side effects or other reasons they can’t take their medication, and hopefully, they think it’s their obligation to tell us about them.”

Our guest blogger is Elizabeth Fayram, RD, LDN, outpatient oncology dietitian at Lahey Clinic

Bone loss can be a common side effect for patients undergoing cancer treatment. Factors that contribute to bone health may be specific treatment types, poor appetite and unintentional weight loss, and a sedentary lifestyle. If you are taking certain medications that may interfere with bone health, such as aromatase inhibitors or androgen deprivation therapies, it is especially important to get enough calcium and vitamin D to help protect against bone loss.

Calcium is one of the building blocks of bones, as well as many other body systems. Vitamin D has been shown to be necessary for calcium absorption and utilization. They are both found in food sources. However vitamin D is best absorbed from the sun, which is limited most months out of the year in certain climates like New England. If you are at risk for bone loss, talk to your doctor or dietician about ways to improve your intake of nutrients. You may need a vitamin D supplement.  Have your vitamin D checked at your next lab draw. If you are deficient, you may need a supplement.

Good sources of calcium:

8 oz. of plain yogurt (400 mg)

½ cup evaporated skim milk (400 mg)

½ cup dry milk powder (400 mg)

8 oz. milk (300 mg)

8 oz. calcium-fortified orange juice (300 mg)

Plant sources of calcium:

½ cup turnip greens or bok choy (100 mg)

1 oz. almonds (100 mg)

½ cup white beans (100 mg)

½ cup broccoli, kale or mustard greens (50 mg)

1 medium orange (50 mg)

Good sources of vitamin D:

Sunshine, 15 minutes per day on face, arms, legs without sunscreen. Ask your doctor if it is safe for you to skip the sunscreen.

8 oz. milk-fortified (100 IU)

Cod liver oil (1,360 IU)

3-4 oz. of fatty fish, like tuna, mackerel, salmon (360 IU)

Helpful tips:

Eat at least 5 servings of fruits and vegetables a day to provide micronutrients that promote good bone health. Stay physically active, but first ask your doctor is exercise is right for you.

Dr. Nugent

Oral cancers are being seen in greater numbers throughout the nation, despite the decline in smoking. But what has emerged as a cause for this cancer is not the usual smoking and alcohol drinking associated with head and neck cancers. It may be another factor, the HPV virus, or human papilomavirus, transmitted sexually.

In fact, doctors say that in some geographic areas perhaps as many of half of all head and neck cancers are now attributed to HPV. The most common site of HPV cancer of the head and neck is the back of tongue and tonsils, or oropharynx.

F.W. Nugent, MD, a medical oncologist at Lahey, calls this a “new type of cancer,” and “an explosion in the incidence of it.” Nugent and his colleagues are seeing more of this oral cancer, mostly in younger men who would not usually develop head and neck cancers.

While it’s estimated that close to 80 percent of all adult Americans may be infected with the HPV virus, and many women develop cervical cancer and genital warts as a result, the spike in HPV-related oral cancers may be due, in part, to the sexual revolution of the 70s. People who have had multiple sexual partners and practiced oral sex may be fueling the spike. Deep kissing might also be a source of transmission. These cancers typically take decades to grow before symptoms appear, explaining today’s surge.

“Oral cancer caused by HPV is genetically different than the representative squamous cell carcinomas of the head and neck, which present from smoking and drinking,” Nugent said.

Mostly heterosexual men are affected by this cancer. Nugent rarely sees women with HPV related oral cancer, though women can infect other women. The typical age for his patients is 50s to 60s.  

Common symptoms of this cancer are pain on swallowing or a lump in the neck. The diagnosis must be confirmed by biopsy (examining a sample of the tissue). Presently, treatment is similar for other head and neck cancers, with chemotherapy, radiation, surgery or a combination of these interventions.

“It is easier to cure than other head and neck cancers. A high percentage of patients are cured with treatment,” Nugent said. But it is unknown whether less invasive treatments might also cure the cancer. “Perhaps we might be able to treat this in a gentler manner and still have success,” said Nugent, “because it is different from other oral cancers genetically.” More study is needed.

A vaccine for HPV, Gardisil, was approved for use by the FDA in 2006, and is given to females, age 9 to 26. The vaccine can also be given to boys. Practicing safe sex is also an option for prevention.

“If you vaccinate everyone, you may be able to prevent this cancer in the future,” said Nugent.

Mr. Svensson

Robert Svensson is a handsome 80-year-old with a young man’s body and zest for life.  In 1989, after a radical prostatectomy, and 30 radiation treatments, Svensson was moving along just fine with his PSAs, until 10 years ago when his numbers starting climbing.

Svensson, a 30-year Lahey patient, began chemotherapy on the recommendation of his doctors. Then a bone scan showed metastases; he was placed on a drug to alleviate pain.  His PSA continued rising. Doctors ordered more chemo, but he could no longer tolerate the treatments. “I was not sad I stopped chemo,” said Svensson. “I didn’t like it, and it didn’t like me.” Soon his PSA had risen more.

When Svensson heard the FDA had approved an immunotherapy for his type of advanced cancer and that his doctors thought he was a candidate for it, he was thrilled. He was not deterred by the four-hour leukapheresis (See Moving Forward, June 8), the extraction of his white blood cells, three times over a six-week period. The cells would be sent to a drug-making site where they would be mixed with a prostate antigen and growth factor. Then precisely timed, each batch, individually produced just for him, would be injected back into him.

On the eve of his first injection, July 2, Svensson was optimistic and a bit hesitant. He would be the first patient in New England to receive the drug called Provenge. At first, he thought about health care reform, the cost of the drug, its limited extension of survival and why he, as an octogenarian, should receive it.  

“I’m not young and I didn’t want to be wasteful,” he said before reconsidering. “I love life and want a good quality of life. I’m a young 80- year-old man.”  

Eight years ago, Svensson lost his wife of 49 years. A former chief financial officer for an engineering company, he lives alone in Bedford and does his own housework, including yard work and snow removal by equipment. A father of three children, all in their 50s, Svensson was looking forward to Fourth of July festivities at his summer home in Barnstead, NH. Fishing was on the agenda with one of his sons, and so were cookouts.

“I’m a content guy and my timing was perfect to get this drug. Being the first is an honor, a privilege and my good fortune. And I’m also fortunate to be a Lahey patient and having access to Provenge.”

Dr. Hesketh

One of the most common fears before beginning chemotherapy is whether you will experience nausea and vomiting (N&V). Thankfully, over the last 20 years, drugs that prevent nausea and vomiting, called antiemetics, have significantly improved our ability to control this most unwanted side effect. Given orally or intravenously, these antiemetics may be administered before or after chemo, and most patients welcome them.  

Paul J. Hesketh, MD, director of thoracic oncology at Lahey and one of the world’s leading researchers on this topic, has published extensively in scientific literature on chemotherapy-induced N&V, most recently in a New England Journal of Medicine article. He answers some of your questions about this topic.

Before we had effective antiemetics, how did patients handle N&V?

We would often have to admit patients to the hospital, instead of giving them chemo on an outpatient basis, as we do now. Sometimes we would have to use sedating medications to put patients to sleep because they could not tolerate the chemotherapy. Few were able to eat normally, and so many lost weight. We didn’t see much improvement until the early 1990s when a new class of antiemetic agents became available.

How effective are they?

They are very effective, and they’re improving further. Despite the progress, about 25 percent of chemo patients today will still experience N&V. One of our challenges is trying to figure out who these patients will be, and figuring out what therapies will help them.

Who is more likely to experience chemo-induced N&V?

Women are more likely than men to experience chemo-induced N&V. We don’t really know why more women are affected. Age, too, is a consideration. We know that younger patients have more N&V. Alcohol use plays a role, but it’s not the glass-of-wine-with-dinner patients. It seems that prior or current heavy alcohol use may protect against N&V, even if the patient is recovering from the addiction. (No one is suggesting cancer patients drink heavily to avert N&V.) The kind of chemo is also a critical factor.

Are some chemotherapy drugs more likely to cause N&V?

Yes, my colleagues and I studied more than three dozen chemotherapy drugs and ranked them by the probability the patient taking them would experience N&V. A high probability for N&V might be a drug like Cisplatin, which will produce N&V in about 90 percent of patients if appropriate antiemetics are not used. The lowest probability, perhaps less than 10 percent, would be for patients on a drug like Bleomycin.

Why is this something you wanted to study?

When I began practicing oncology, we knew very little about this side effect.  Chemotherapy drugs I most commonly used for my lung cancer patients had significant potential to induce N&V. N&V weakens quality of life, impairs functional activities and can compromise adherence to treatment. It has been gratifying to both witness and contribute to the progress we have made in this area over the last 25 years.

Standard treatments, including chemotherapy and the drug interleukin-2, have had limited success.  Now a new therapy has emerged that improves patient survival. It’s called ipilimumab, and it’s a monoclonal antibody treatment. Findings from a study of the drug’s effectiveness were recently released at the American Society of Clinical Oncology meeting earlier this month in Chicago.

Caroline Bevona, MD, head of the Melanoma Clinic at Lahey Clinic, provides insight into this new therapy.

What is a monoclonal antibody treatment, and how does it work?

Monoclonal antibodies, like ipilimumab, are made from the cells of animals or humans, and are grown in the lab. The body’s immune system work to fight infection, and it can also destroy cancer cells. One of the cell types involved in this process is called the ‘T cell.’ The new drug works by blocking a molecule called CTLA-4, which is found on the surface of T cells. They free T cells, so that they attack cancer cells.

How effective is ipilimumab?

I would consider it a major breakthrough for treating metastatic melanoma. Up until now, the therapies have not been very effective. Although this drug is effective in only a subset of patients, those who respond to it have their lives extended by years. In a multicenter phase III trial, the one and  two-year survival rates on the drug were 45 percent and 23 percent, double the survival of those not on the drug. Median survival was 10 months.

Are there side effects?

Some of the side effects include tiredness, diarrhea, and inflammation of the colon, nausea, hepatitis, skin rashes and damage to the endocrine system. Most of the time, these are treatable and reversible, but there have also been some deaths associated with ipilimumab’s use.

When might it be available?

Ipilimumab is currently in phase III trials, which is the final phase of drug testing before it can be approved by the FDA for general use. Currently if someone qualifies, they can receive this medication through a clinical trial. It is also available “on a compassionate basis” at many medical centers nationwide.

Are there long-term considerations for this therapy?

The success of this therapy gives hope that other treatments that work in a similar way will be developed, which may be effective for an even greater number of people with metastatic melanoma.

Ms. Costello

Elaine L. Costello, RN, OCN, has practiced cancer nursing for 35 years, all of it at Lahey Clinic. She has seen the evolution in diagnosing and treating cancer and how patients are participating more in the medical care they receive. Costello shares the changes she has observed over the years.

Has the typical cancer patient changed? Yes. Today our patients are much more medically savvy. They come well prepared on what they’ve learned on their own about their diagnosis and potential treatments. And they come with lots of family support, something we didn’t see as much in the past.

Why not? Cancer was considered a dreaded diagnosis, a death sentence, some thought. People hid it from some family members and friends. A patient would tell a spouse, but maybe not other family members or friends. Having cancer was private, something not to share with their community, as a whole. People referred to cancer as ‘the big C.’

Today, patients are far more open about their diagnoses. And in addition to having the support of family and friends, there is lots of community support. We have organizations that help patients undergoing treatment with house cleaning, shopping and providing rides to their medical appointments, among some of what’s available.

How have the treatments changed?  A lot more treatment happens on an outpatient basis, unlike years ago when patients were admitted to the hospital. Most chemotherapy is done in an ambulatory setting, unless there is a complication or unless surgery is required. It is possible to be diagnosed with early stage cancer, be treated and never be admitted to the hospital.

How have the drugs to treat cancer changed? The drugs have improved tremendously. Nausea and vomiting usually don’t happen with chemotherapy now because we have drugs that control that. Thirty years ago, the chemo made patients very ill. Often times because patients had gotten ill with chemo, when it was time to return for more treatment, they would feel nauseous. This is called ‘anticipatory nausea.’ Now we are able to control many of the side effects better because we have more drugs to choose from. I see patients living longer, even when they have stage 4 cancers.

Why have you stayed so long in cancer nursing? Our patients are so appreciative. You get to know the patients long term, and you know their families, too. I like this job because I get to see my patients get treated, get better, and then go on with their lives. That’s the amazing part of it. We will keep an eye on them going forward, but they’re well, and they can go on to enjoy the rest of their lives. 

What do you think about how cancer will be treated in the future? Cancer is not a death sentence. With the progress being made, I think cancer will be treated as a chronic disease someday, just like diabetes.

Why is daddy so tired all the time?

Why is mommy losing her hair?

Why doesn’t mommy pick me up from school anymore?

When a parent is diagnosed with cancer, children have questions. Although no parent wants to talk with their child about cancer, communication is very important. Here are some tips to make this conversation easier, courtesy of www.cancercare.org:

Give your children accurate, age-appropriate information about your disease.

Don’t be afraid of saying the word “cancer.”

Show or explain to them where the cancer is in the body.

Practice what you are going to do beforehand so you feel more comfortable.

Remember children may invent their own explanations—which can be even more frightening than the facts—if you don’t talk to them about cancer.

Explain your treatment plan and how it may affect their lives.

Ready your children for any physical changes you might go through during treatment (for instance, hair loss or extreme tiredness).

Let children know that their needs will still be taken care of (for example, “Daddy will take you to baseball practice instead of mommy for a while.”)

If you don’t know the answer to a question, don’t worry. It’s okay to say, “I don’t know. I will try to find out the answer and let you know.”

Explain to your children that no matter what they’ve been thinking, they did not do anything to cause your cancer. Let your children know that they cannot “catch” cancer like they can a cold.

Let them know that there are others who can help. These people may include your spouse or partner, relatives, friends, clergy, teachers, coaches, and members of your health care team. Let your children know that they can ask questions of these adults and talk to them about their feelings.

Allow your children to help in your care. Give them age-appropriate tasks such as bringing you a drink or an extra blanket.

Encourage your children to express their feelings. Let them know that they can express any feelings, even those that are uncomfortable. Let them know that it’s also okay to say, “I don’t feel like talking right now,” if that is the case.

Show your children lots of love and affection. Let them know that although things are different now, your love for them has not changed.

Remember: you are the expert on your children. Cancer can be scary and disruptive, but it doesn’t change the fact that you know your children best. Trust your sense of how to best support them during this difficult time.

Dr. Wolff

A new therapeutic “vaccine” for advanced, hormone-resistant metastatic prostate cancer is now available at a handful of medical centers that participated in its Phase III clinical trial. The drug is called Provenge, and while it will not prevent the disease in the true meaning of the word “vaccine,” it will coach the body’s immune system to attack existing cancer.

The FDA recently approved Provenge for use after a stringent review, one that found the drug had benefits like a 38 percent improvement in three-year survival. The drug reduces the overall risk of death by 22.5 percent in the men who were enrolled in the trials, which were conducted at various cancer centers in the nation. In general, the study results found Provenge can extend a patient’s life by about four months.

Provenge is a type of immunotherapy, and producing it is a very complex process because the drug is made separately for each patient. Here’s how it is made: White blood cells are removed from the patient’s blood (a process called leukapheresis) three times within a six-week period. These are sent to the drug-making site where they are incubated with a prostate antigen and a growth factor. (Let’s call the final deliverable a “concoction.”) 

Each time a concoction is made for a particular patient, it is precisely timed for injection back into the patient within the given time frame. Because each concoction has a miniscule shelf life, it’s imperative that the patient receive the injection within the turnaround point. The therapy is delivered by medical, not commercial courier, to further assure safety and speed.

Only 2,000 patients will get the drug until it is cleared for wider use outside the research centers. John Wolff, MD, principal investigator for the Provenge trial at Lahey Clinic, said “We believe it’s very safe and easier on patients than chemotherapy, but it’s not a cure, and the benefits are limited.”

Medicare will cover the cost of Provenge for its patients. That’s a good thing, seeing many prostate cancer patients are of Medicare age. It is not known, however, whether the cost for the six-week treatment— more than $90,000—will be covered fully or partially by other insurers. Copays, if any, are not clear, either.

Nevertheless, Wolff calls this immunotherapy “exciting,” saying “the therapy is proof of the concept– that you can actually produce a drug like this and it works.”

Provenge may be the beginning of future cancer therapies, for prostate or other cancers. It might also be considered for lesser advanced cancers, at some point, and perhaps better the survival. “This is a unique drug,” said Wolff, but it’s not for everyone. We will consider it for patients who have exhausted other hormonal therapies.”

Share your true feelings.

Feelings such as anger, fear, resentment and frustration are all par for the course in the face of a cancer diagnosis. Still, many people hide such feelings from their partner for fear of upsetting the other person. While that’s understandable, it’s important to talk about how you’re really feeling, whether good or bad. This is not just for your own well being, but also to avoid creating distance between you and your partner.  If something feels too scary to talk about, try writing down what you want to say and practicing ahead of time.

Then respect where the other person is at.

Unfortunately, you and your partner won’t always feel the same way. One week you may be scared; your partner hopeful. The next it may be reversed. Try to talk openly about these differences and expect that you won’t always be on the same page.

Consider how you handle stress.

How a person copes with stress often affects how a person communicates. For instance, one person may cope by trying to fix the problem. The other person may simply need support and validation. This couple is then at a crossroads. Try to be cognizant of how both you and your partner tend to react to stress, and again, respect and acknowledge each other’s differences.

Say what you need.

You are always more likely to get your needs met if you are honest about them. Do you need support and lots of company, for instance, or time alone? Your needs fluctuate, so be open about them as often as possible.

Consider the when, and not just the what.

You don’t want to be rushed when you and your mate sit down to talk. Be sure to choose a time when you both are relaxed and undistracted. If necessary, perhaps schedule a daily or weekly time to talk.

 Try not to focus on the illness all the time.

Talking about other things aside from cancer is important for each of you as individuals, and for your relationship.

 Get outside help if you need it.

An outside third party, whether in the form of a social worker, couples therapist or support group, can be a big help when a couple is dealing with cancer. One interesting study published in the National Association of Social Workers’ Social Work Research journal (Vol. 34, No. 1) showed that the quality of life for breast cancer patients was consistently better over time if the patient and their mate participated in a couples-based intervention program. Check with your doctor or local American Cancer Society for resources.